International Brain Banking

We still know very little about the human brain. With an estimated 100 billion neurons (nerve cells) in the human brain, scientists grapple to understand what these neurons do, how they interact with one another and how they make us who we are. It is therefore not surprising that we are still some way from fully understanding the human brain, and more significantly the autistic brain and why its development is altered. There are many scientific approaches that can be used to visually inspect the human brain, such as magnetic resonance imaging (MRI), but only one way of directly studying the human brain – and that is by looking at post-mortem brain tissue. For this very reason, brain tissue is a critical element in the process of neurological scientific discovery. Unfortunately, tissue donation remains rare, hindering the very research that will help us to understand autism.

The Autism Tissue Program (ATP), a Scientific Program of Autism Speaks, is dedicated to supporting scientists worldwide in their efforts to understand autism, autism related disorders and the human brain. The ATP is a tissue based repository (bio-bank), among only a few worldwide, that makes brain tissue available to qualified scientists in order to advance autism research.

In an effort to improve the worldwide availability of tissue-based resources in autism research, Autism Speaks has been seeking to expand its efforts by establishing sister programs in other countries. In 2009, Autism Speaks partnered with UK charity Autistica in creating a 2nd bio-repository based at the University of Oxford in the United Kingdom (UK). There are already 15 brains that have been donated to this tissue bank and, in addition, awareness of the importance of brain donation for autism research within the British autism stakeholder community and general public has increased enormously.

The Medical Research Council (MRC) – the UK’s equivalent of the NIH – has recently formed a network of UK brain banks, including the Oxford autism bank as a key member. This new infrastructure will be a vehicle for facilitating the awareness of the need for autism tissue collection as well as the donation of tissue from controls (individuals who have no underlying neurological or psychiatric disorder) and related neurodevelopmental disorders (e.g. Fragile X syndrome). By encouraging international collaboration and the establishment of a bio-bank network, we can increase the numbers of donations of this precious resource and build the capacity needed for research in this field.

Autism Speaks’ staff recently visited the brain bank in the Netherlands to explore new collaborative opportunities. Due to their geographical size and national organization, the Netherlands have a unique resource in that all brain donations are sent to a single bank based in Amsterdam. This streamlined system enables a higher rate of tissue donations and the administration is relatively straight forward. With the support of the Dutch autism research community and our partners at the Netherlands Autism Society we are hoping that the Netherlands Brain Bank could soon begin collecting autism tissue. Similar opportunities are also being explored in Sweden and Canada.

We are making great strides in scientific discovery and the last few years have seen significant advances in the genetics of autism. More than ever this highlights the importance of using autism tissue collections to explore how genetic differences in people with autism affect the cellular and molecular development of the brain. In turn, these research investments will guide the development of new pharmacological treatments for people with autism to alleviate some of the core and secondary symptoms. With more than 100 research publications resulting from the efforts of Autism Speaks, The Autism Tissue Program, Autistica, and most significantly the brains generously donated by families, we are off to a promising start.

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Today I was reading about the recent tragic story of of a retired NFL player who killed himself and left a note specifying that his brian be left to the NFL brain injury brain bank. Apparently many NFL players are experiencing early onset dementia as a result repeated head injuries. The damage is devastating and permanent.

The parallels w/ autism are powerful. My son was developing typically and then -boom- stroke like symptoms and fevers post multiple vaccination resulted in severe encephalopathy and brain damage. My son’s “autism” label is just a euphemism for brain injury.

Like the football players Christian was active and healthy and then a mont later barely recognized me and could no longer speak.

As w/ dementia there are virtually no effective treatments. You can dx it early and try to halt the cognitive impairment but that that’s it. There is a reason why the regressive population make the least progress w/ traditional interventions. How can you “re-wire” a brain that has suffered such a devastating injury?

To make matters worse, parents like me lived the before and after and feel strongly our children did not have to become autistic. Like the NFL players were not predestined to develop dementia at 40 yrs old.

Now the NFL is finally taking again to remove the primary trigger- aggressive tackling. As a result I am sure we will see fewer of these tragic suicides among NFL retirees.

I am happy AS is pursuing brain banking. It is an important endeavor. We should all donate our brains to this bank after our deaths. However, unless AS gets equally involved in the PREVENTION of brain injuries in the first place this is merely a very expensive exercise.

Tread carefully here AS. There is so little clinical science is being conducted to help those medically affected by ASD now. There is almost no independent vaccine safety research on the current schedule. There is almost no research on vaccine injured ASD kids.

Unless we studying the triggers – as the NFL has studied the impact of concussions and moved to redress the situation – collecting brains will not halt the autism epidemic.